Bone mets … and another trial

Two things. 

1.  The cancer has spread to my bones.  This is called bone metastasis, and it’s not a particularly good sign.

2.  The cancer in the lymph nodes in my chest now shows “near-complete resolution” with “minimal hypermetabolic activity.”  This is GREAT NEWS and as far as I’m concerned, it’s at least a minor miracle.  Not to use the word lightly around my friends the nuns or anything, but really?  Near complete resolution?  Awesome.

We just have to work on the cancer in my bones now, adding Zometa infusions once every four or twelve weeks to strengthen the bones and (hopefully) slow the cancer’s growth as the Femara continues to block the estrogen that feeds it.  I say once every four OR twelve weeks because we don’t know yet.  I’ve agreed to join another clinical trial and recieve whichever treatment the randomizer assigns me to receive. 

Experimental research is important.  Just because the last clinical trial was so hard on me doesn’t mean this one will be – and every little piece of knowledge helps the researchers plan treatment not only for me but for the women and men who come after me.  Bone mets happen to 70% of breast cancer patients, they say, and we need to find ways to control their growth until they can be stopped.  So I’m off to start another clinical trial, with my first infusion tomorrow.  I’m hopeful.

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Like Mama won over cancer

Little Bear, worried about a field trip yesterday, “But Mama, I need you there in case there is something scary.”

You’ll be okay, Little Bear.  Mama can’t go today, but your teacher will be there, and she will keep you safe. 

Cuddled in my arms, he asked, “But what if there is something scary?”

Well, there will be, Little Bear, it’s the story of Passover, and Pharoah gets angry.  He’s the bad guy, remember?  But Moses wins.  It’ll be okay, because Moses wins.

From deep in my arms, came a small, confident voice:

“Like Mama won over cancer.”

That’s right, Little Bear.  And we cuddled and were strong together.

I haven’t talked about my cancer with them in months.  But of course they know, since I’m still gaining strength and taking naps in the late afternoon, when the morning just isn’t enough, or when I’ve pushed myself to get work done.  I’m stronger and stronger, but still not close to 100%.

And we have scans on Friday.  I’m nervous, I’ll admit.  But I want Little Bear’s words to be true, one more time. 

I want to win over cancer.  Again.  And yes, I know that’s a selfish hope, to beat cancer a FOURTH time, but it’s selfish in protecting my children.  They’re not ready for me to leave yet, and I am not ready to leave them to grow up in the world without their Mama.

Things are looking up!

The last two months have been crazy.  Ups and downs and downs and ups and sick and better and laid out flat in bed for weeks at a time. 

… and then better.  As it turns out, my oncologist and the nurse for my clinical trial weren’t bluffing.  I’m not dying.  Well, no faster than anyone else!  I felt like I was dying, sure, but as it turns out, that’s in large part due to the massive dose of experimental drugs I was on, the neutropenia the meds induced, the highly elevated blood pressure, and the kidney infection that I battled without even knowing it for weeks.

Let’s talk about those drugs.  Before a drug is approved for use in the treatment of cancer, it has to pass not just one but several phases of a clinical trial.  When the scan found seven new tumors the first of January, I agreed to enter a Phase I/II clinical trial testing the combination of Nexavar and Femara in breast cancer patients.  This combination has never been tried in humans before, and while there is great promise (due to Nexavar’s succesful use in liver and lung cancers, and Femara’s use in breast cancer patients), there is also no guarantee.  It could stop my cancer from spreading, it could reduce the tumor burden, or it could do nothing.  It could also have terrible side effects that make me feel like death.

Ahem.

So.  Here we are.  Two months out from the diagnosis of my fourth cancer.  90 days after starting the clinical trial (during which I’ve probably only been taking the meds half the time, as the other half I was told to stop taking them and let my body recover, not once but three times).  One month from the PET scan that will tell us whether this drug combo is working to keep the cancer at bay.  Back on the meds, at half the original dose, and pushing myself further each day.  Yesterday I was able to go out for coffee with friends in the morning, pick my kids up from school, and go to the chiropractor for treatment of the pain in my back, neck, and hip, in hopes that some of it is not caused soley by the meds, but maybe just by the general weakness that chemo left behind as a parting gift.

It worked.  I felt better.

And I walked hand-in-hand with my children down the streets of downtown Silver Spring, stopping in to introduce them to the movie theater (verdict: scary!), and then we did something that just two weeks ago I thought I’d never have the chance to do with my children.

We went ice skating. 

Double runners, hand-in-hand, very, very slowly around the ice rink.  It was magical.  If you get the chance to try the new skating rink in downtown Silver Spring before it closes for the season (March 13), do it.  It. was. awesome.

And although I still napped all morning and went to bed at 6 p.m., I did so with a smile on my face. 

I have hope.

Added for clarification, 3/4/11: 
Phase I clinical trials are designed to address the question: Is the treatment safe? These trials are the first time that the drug or drug combination have been tested in humans.  Phase II clinical trials are designed to address the question: Does the treatment work?  A combined Phase I/II trial like the one I’m in is broad-reaching, determining both what level of the drug or drug combination is safe to give patients without severe side effects (hellooooooooo, extreme weakness, feet and hands peeling off, and compromised quality of life!) and whether the drug or drug combination actually slows or stops the growth of the cancer in question.  So this is a high risk trial, in some sense, but it also holds out the promise of high reward – an increase in quality of life and/or an extension of quantity of life over the use of Femara alone.  And that, for me, is worth the risk.

Bloganthropy and Lymphedema

A little bit of good goes a long way.

A couple years ago, two women named Rachel and Robin created a new product – a compression sleeve that they and their friends would be willing to wear to control their lymphedema, swelling in the arms caused by the removal of lymph nodes during a mastectomy.  They started a company called LympheDIVAs; Rachel’s brother Josh and their parents continued to improve the product and market it to other breast cancer survivors after her death. 

Carole lost her cousin Crickett to metastatic breast cancer too, but instead of wailing at the universe, Carole and her aunt Bonnie set up a foundation to help other breast cancer survivors feel good about themselves again.  Carole sent an email offering help to survivors, and one copy landed in Sue‘s in-box. 

Sue forwarded the email to me, offering me the opportunity to be pampered a little, because she knew I was suffering from chemotherapy again, and it touched my heart.  My heart was kinda busy, though, because my physical therapist Jonelle had mentioned casually while working on the lymphedema in my arm that it was so great that I was wearing a lymphedema sleeve to control it — many of her patients couldn’t afford one.  When I arrived home and checked my in-box, there was the opportunity to make a connection and to fix this wrong that lay on my heart — to help others have what I have, the opportunity to control this medical condition at home, without weekly trips to the physical therapist.

Three phone calls later, Josh and Carole agreed to provide donated lymphedema sleeves to patients in need, and the lymphedema sleeve project was on.  The problem then was how to make people aware of the opportunity, so Sue and I sent a couple emails and a few tweets and then The DC Moms and twitter friends and blog friends and friends of friends stepped up to help, to spread the word, one tweet, one post, one update, one person at a time.

I wrote a post, Sue wrote a post, Minky wrote a post, and the news gained traction.  Over 100 people tweeted the links that week.  150 people shared a link on Facebook.  Over 40 bloggers added their posts to ours, in attempt to saturate the internet with the news, so that a woman in need, searching for help to afford lymphedema sleeves or other post-mastectomy gear, could find it. 

Kristen, Jessica, Amie, Joanne, Marty, Victoria, and Elizabeth then put their money where their voice is and donated $1/comment on their lymphedema post.  Others went to donate so that additional sleeves could be bought as needed, and before we knew it, $1518 had been sent to Crickett’s Answer for Cancer by over 20 people, and 36 new breast cancer survivors were helped in the first 40 days.  

On Friday, the project was recognized by Bloganthropy, with me named as January’s Blogger of the Month.  Thank you, Bloganthropy, but the award really belongs to all of the bloggers who helped saturate this part of the ‘net with notices that there is now help available for breast cancer survivors who need but can’t afford compression sleeves to control their lymphedema. 

Thank you, friends.  Every day, your actions remind me that there is indeed good in the world.  Here are the posts that were written in support of this effort, and tweeted ’round the world:

Aimee: http://smilingmama.blogspot.com/2011/01/surviving-in-style-free-lymphedema.html
Amie: http://www.mammaloves.com/2011/01/wanna-join-an-army/
Amy:  http://teachmama.com/2011/01/new-for-us-friday-help-for-cancer-patients.html
Ann Bibby: http://www.care2.com/causes/health-policy/blog/-blogger-reaches-out-to-breast-cancer-patients/
Becky:  http://www.morebirthdays.com/blog/featured/the-power-of-one-helping-fellow-survivors/
BlogHer (Mel): http://www.blogher.com/start-out-your-new-year-helping-great-project?wrap=blogher-topics/conditions-ailments&crumb=32399
C. Mom:  http://www.lacaramamma.com/2011/01/06/can%E2%80%99t-afford-lymphedema-sleeves/
Crunchy Chewy Mama: http://crunchychewymama.com/index.php/when-a-friend-gets-cancer/
Dr. Kathleen Ruddy: http://breastcancerbydrruddy.com/2011/01/25/recycling-information-help-for-lymphedema/
Elaine:  http://connorandhelen.blogspot.com/2011_02_01_archive.html
Elizabeth: http://halfchangedworld.com/2011/01/for-whymommy/ Florinda: http://www.3rsblog.com/2011/01/for-whymommy-help-for-cancer-survivors.html
Garza Girl: http://www.garzagirls.com/2011/01/24/f-off-cancer/ and http://www.garzagirls.com/tag/whymommy/
Ilinap: http://www.dirtandnoise.com/2011/01/breast-friends-and-a-39-mile-walk-in-the-park.html
J.J. http://caffeineandaprayer.com/2011/01/09/lymphedema-sleeves-real-help-for-breast-cancer-survivors/
Jane:  http://jane.whiteoaks.com/2011/01/08/lymphedema-sleeves-demystified/
Jessica:  http://aparentinsilverspring.com/2011/01/a-parent-in-silver-spring-on-cnn-how-the-story-changed-how-im-changing-it-again-for-cricketts-answer.html
Joanne:  http://www.punditmom.com/2011/01/princesses-fighting-cancer
Jodifur:  http://jodifur.com/2011/01/cant-afford-lymphedema-sleeves.html
Justice Stacey:  http://mamalaw.com/2011/01/cant-afford-lymphedema-sleeves/
Khara: http://babymammachronicles.blogspot.com/2011/01/help-for-breast-cancer-patients.html
Kim: http://www.sheposts.com/node/859
Kristen: http://www.motherhooduncensored.net/motherhood_uncensored/2011/01/whymommy.html
Lara: http://chickennuggetsofwisdom.com/2011/01/24/no-princess-fights-alone/
Leticia:  http://www.techsavvymama.com/2011/01/no-princess-fights-alone-join-army.html
Liz: http://www.thisfullhouse.com/reviews/2011/01/good-causes-cricketts-answer-to-cancer.html
Lynn:  http://organicmania.com/2011/01/07/helping-those-who-need-it-most/
Marty: http://canapesun.blogspot.com/2011/01/lymphedema-sleeves-for-every-survivor.html and http://canapesun.blogspot.com/2011/01/lets-all-be-copycats-raising-money-for.html
Mayberry Mom: http://mayberrymom.com/2011/02/04/on-not-fighting-alone/
Mel: http://www.stirrup-queens.com/2011/01/322nd-friday-blog-roundup/
Michele: http://scrapsofmygeeklife.com/everything-else /cant-afford-lymphedema-sleeves/
Michelle:  http://www.wifeandmommy.com/cant-afford-lymphedema-sleeves/
Minky:  http://dialmforminky.com/2011/01/need-help-affording-lymphedema-sleeves/
Mod*Mom: http://www.momblognetwork.com/%5Btermpath-raw%5D/lymph-edema-sleeve-giveaway-12000
Robin: http://noteverstill.blogspot.com/2011/01/rare-psa-lymphedema.html
Robin: http://wwwmylifeasitis.blogspot.com/2011/01/cant-afford-lymphedema-sleeves.html
Sam: http://www.momblognetwork.com/%5Btermpath-raw%5D/help-our-friends-support-crickett-s-answer
Stella: http://imstell.wordpress.com/2011/01/06/advocacy-and-lymphedema-sleeves/
Thien-Kim: http://www.imnotthenanny.com/2011/01/cant-afford-lymphedema-sleeves-new-help.html
ThisFullHouse @ Wellsphere: http://www.wellsphere.com/parenting-article/for-whymommy-give-cancer-the-virtual-bitchslap-it-deserves/1325109
UrbanMama:  http://spa.typepad.com/mamas/2011/01/index.html
Vera: http://breast4healing.amplify.com/2011/01/25/361/
Victoria: http://www.themummychronicles.com/2011/01/copy-cat-for-cancer.html
Wendy: http://wendyharpham.typepad.com/healthy_survivorship/2011/02/help-for-patients-with-lymphedema.html

This effort was recognized by writers at the American Cancer Society, Bloganthropy, BlogHer, Care2, Mom Blog Magazine, and ShePosts as being an exciting community effort.  Thank you all.  And if I missed your post or it hasn’t gone up yet?  Let me know.  I’d be thrilled to add even more!